Yesterday, Jess Jacobs died. Like so many others on Twitter, I knew Jess just well enough to be profoundly frustrated as I watched helplessly as the healthcare system failed her again and again. Today, the small world of Internet patient advocates mourn for her across blogs and twitter. The world of people who are trying to fix […]
Category: epatient
Expert Healthcare Hackers
(This is a preview of a talk that I am going to give next week at Healthcare::Refactored, with Karen Herzog) There are two definitions of the word “Hacker”. One is an original and authentic term that the geekdom uses with respect. This is a cherished label in the technical community, which might read something like: “A person adept at […]
How to change the world over the weekend
I love hackathons. I love winning them. I love competing in them. I love winning them. I love judging them. I also love not losing them. This weekend, I am acting as a mentor to the first Health 2.0 hackathon in Houston Texas. As far as I know (which is not that far, really) this […]
ePatient HIMSS 2012 Badge
Hi, I am happy to announce with psuedo-permission from the Society for Participatory Medicine (by which I mean that they have not asked me not to do this) a Twitter badge for HIMSS 2012. There are a handful of the epatients who are attending this years HIMSS (alas, I am not among them) and they […]
The e-patient reach
As many of my readers know, I am now regularly blogging on radar. There, I have written a post called epatients: the hackers of the healthcare world. It is pretty much a tour of how anyone who is already in the technorati, can become an e-patient. It heavily features the work that I have been […]
The Patient Scientist
Over on the Society for Participatory Medicine mailing list we have been discussing the recent Readers Digest blog post titled: 50 things your nurse wont tell you. You really have to read it before reading this article, this post will only make so much sense without that. I suggested that part of being an epatient […]
Practical collaborative document writing for patient communities
Hi, I have a lot of experience with collaborative document writing, and now, in my role with Cautious Patient Foundation, I have been providing technical help to several patient communities. I helped write the security standards for the NWHIN Direct project and I am currently working with the e-patient/QS community to create a document detailing […]
Sharks, Bees and Privacy
Hi, I am happy to announce that my new article on healthcare privacy and interoperability has been accepted in the Journal of Participatory Medicine. I am not against privacy in healthcare, but I am against the notion that privacy concerns should trump issues relating to good healthcare. You can read the full article here: http://www.jopm.org/opinion/commentary/2011/07/05/sharks-bees-and-health-privacy-paranoia/ […]
A patient by any other name
Recently two communities have been discussing a pretty basic question. What should we call the artist formerly known as “patient”? The two communities are the e-patient community and the “patients” in the patient safety movement, specifically those that met at the last IHI meeting. But why would we want to call patients anything other than […]
Meeting Patient Safety
Today, I met with a tremendous number of patient safety advocates at IHI. My work with Cautious Patient Foundation centers around patient safety. But I have, up until now, not met very many Patient Safety advocates in person. That all changed today. I was introduced to forty of them at once. Frankly, it was heart-wrenching. […]